perspective

Two things I have always enjoyed doing are going to Estate sales and sorting through pictures. But lately both of those things are becoming not quite so fun.

About 20 years ago, a friend of mine didn't have a camera, and I asked her about it. (I was always taking pictures of everything and everyone.) She told me that her parents held an antique store and often were invited to sort through homes after people had died and the remaining relatives had taken all they wanted. Pictures were one of the things that often got left behind. She said you wouldn't believe the number of photos that got thrown away. I've tried to be a little more selective in what I take and what I actually print (printing and digital photographs...that's a whole separate blog post!) since that conversation, but I still take a LOT of pictures.

During Mom's surgery and over Thanksgiving, we tackled the boxes of photos Mom has, trying to sort them into ziplock bags by years. In four days of work, sometimes with three people working, we only emptied/organized three boxes. My sister and I tossed quite a few (when Mom wasn't looking). And now I'm trying to place some of the ones I had sorted years ago into albums. I've made a lot of progress, but there's still a lot to do.

And estate sales...lately I'm finding the same thoughts running through my mind at estate sales as when I sort through pictures - this will be my stuff some day. I like to think that before I die I can downsize and sort through and give away or sell most of what I have, but the reality is that may not happen. And since we don't have children, there's not likely to be anyone who would really want what I have. I can hear my nephew now. She STILL has that television?! It's a 100 years old!!! Take that to the dump! Although there is one advantage to having a television that is over 30 years old (and still working fine)...thieves don't want it! :)

I know some of these thoughts came about when I helped a friend and then my sister move last year. It really made me think about how much stuff I have and what will be done with it when I'm gone. And that's not a bad thing. I've done a lot of cleaning and organizing since that time, and plan to do a lot more before the year is out. And I'm slowly tackling projects that I had put aside for "the future".  That time is here, and it is quickly marching past.

paperwork, heartache and headache

My cousin Rachel, in her early 30s and mother to two, is fighting with insurance...to have her reconstruction surgery. No one at that age who has lost her mother and grandmother to breast cancer, has faced a stage 3 diagnosis, has endured a double mastectomy, chemo, radiation, and is now dealing with the side effects from those treatments, should have to fight and refile paperwork just to have her ports removed and breasts reconstructed. Friday she found out that the insurance was denying the procedure for the 2nd time in five months. The first time they said her "application" was never turned in; the second time they said the paperwork proving her radiation treatments were over was not submitted. My heart hurts for her. Incompetence on anyone's part is not something you need to contend with while you are recovering from a cancer ordeal.

Sometimes I wonder what would happen to our country if doctors refused to deal with insurance companies at all, and you paid a set fee for medical services, just like you would when visiting a grocery store or department store. My cousin who works on hospital equipment (he's a mechanic for MRI and other such machines) says the technology is so far advanced that no one would ever be able to pay for it. He's probably right, but I can't help but think there has to be a better way than what we are doing now.

brief update

Well, since my last post on body piercings, we went to Krispy Kreme Saturday evening to get a hot doughnut (something we've never done before). As soon as we made it through the door (the line was long), I was face to face with another customer who had the "all over" piercing...except this girl had one I had never seen before.  She had about 5 holes in each ear, the eyebrow, the upper lip, the lower lip, the tongue...and a fingernail size stud above the nose on each side of the beginning of her eyebrows. It's one of those scenarios where you don't want to look but you have a hard time not looking. I wanted so badly to pull out my camera and snap her picture and post it (it was almost too incredible to see), but I knew that would be rude and I wouldn't want someone doing that of me. Can't you just imagine that post?  I saw the craziest girl today. Her hair had NO color in it AT all and NO tattoos or facial piercings. Is she a total prude or what? Except I don't think the language would be that drab.

In case you haven't seen what I've been talking about, this website shows both the eyebrow piercing (you'll have to scroll down), as well as the ear disks, plus many other things. A few will make you squirm.

When I first read the Hunger Games trilogy, I remember laughing a little at Katniss' description of the people in the capital and how they dressed. No one could be that bizarre, I thought. Now I'm starting to understand.

thoughts upon thoughts

Over Christmas we had one of our "normal" crazy conversations with a set of nieces and nephews. Within the last few years they've started throwing out what they call "random topics" for us to discuss (though I'm finding they're a lot less random than they want us to believe). This year one of their topics was facial piercings (to which they clarified eyebrow, cheek, lip, tongues, excessive ear piercing...the "all over" look I think they called it). I think they expected Bobby's "yuck",  but my response sent them into a fit of giggles and shock. There's nothing wrong with it, the Bible doesn't condemn it, but it makes me want to throw up. If I go into a restaurant and waiter/waitress has it, I lose my appetite. I would seriously consider leaving. Even if I don't, I wouldn't go back there again. (I think it was the last sentence that made their jaws hit the floor.) My niece, who is all about peace and love and harmony (whose mouth was still on the table) asked "You mean, if I came home, the niece you loved so much, with my face all decorated like that, you wouldn't love me anymore?" Bobby told her she better NOT come home like that, but then said he'd still love her. I told her I'd love her but I would have a hard time looking at her and certainly wouldn't find her pretty any more. And then jokingly told her we'd take her to the doctor for a mental evaluation.

I do find such degradations of the body repulsive. My stomach literally heaves when I see a person (or a clerk) in a store who has the circular holes punched into their ears. It reminds me of the remotest tribal areas of Thailand and Africa. I find it as revolting as female circumcision.

So why am I bringing this up?  Because last night when we got home we had a discussion on an issue that a friend finds morally wrong. While the activity is not something either one of us do, our reasons are personal. We simply do not see this as a moral issue. My first thought was to totally dismiss the person's concerns as trite and critical. But my niece would probably say the same thing about my revulsion to certain facial piercings. In her 14 year old mind, it is almost normal. In my 42 year old mind, it's downright insane. But it's really not a doctrinal matter. It is a matter that impacts your day-to-day life and how you and others perceive you, but I would be very hesitant to call piercings an issue of morality, even if they do impact the body/temple and repulse me.  I fear that sometimes we get so caught up in being "right" (which is actually the sin of pride) that we forget others who share our core doctrinal beliefs can practice something that we personally find repulsive and still not be wrong.

job bank ideas

In my mind, I've always (okay, the last ten years or so) thought about owning/running a quilt shop. Whenever I see an empty building in our area, I mentally think about how that spot would/would not work as a space. And whenever I enter a new quilt shop, the back of my mind is storing ideas or rejecting layouts. The reality is, this will always be a dream. One of those things I think about, but will most likely never do.

In the last two weeks an airline called Frontline has made news in the SCI world, and not in a positive way. They were fined $50,000 for refusing to allow a passenger to fly because he was a quadriplegic and couldn't hold himself upright in the seat without extended seatbelts (which he had made the staff aware of when the bought the ticket and had even brought his own belt extensions) and then a second man was boarded after the plane was full (wheelchair users are always first on, last off because staff needs the extra room to transfer them in out of the boarding chair and into the passenger seat), so the staff did not have room to maneuver as much as they usually do and they dropped the passenger during the transfer (someone didn't remember to put the armrest on the plane chair up and out of the way). Thankfully he wasn't hurt (other than bruising), but he did complain, as well he should have, and requested that attendants be re-trained (or trained, period) in how to handle wheelchair bound passengers. So here's my new idea deposited in my mental job bank: an airline that's main customers are wheelchair users and their families and friends. Airplanes will have every other three rows (one row of seats, then the next three rows removed) and will have runners in the floor where electric chairs or scooters can be "locked" down into the floor, just like a passenger van for wheelchair users. Since wheelchairs are heavy, there will be less passengers on each flight, and flights would be limited to the number you could have a day (due to the amount of time boarding and deplaning). There will also be a luggage/storage space in the back for walkers, canes, and larger-sized carry-on bags since many wheelchair users need medical supplies throughout the day. Restrooms on-board will be wheelchair accessible. Granted, you wouldn't be able to fly to as many places, but I think if you had international flights going out three times a week and to main cities in America daily, I think they'd easily fill up. Manual wheelchairs would still have to transfer into regular seats,(for safety purposes) but their chairs could be stored in the top of the plane storage area and not underneath. The profits probably wouldn't be anywhere near what regular airlines make, but with 1 million SCIers in America alone (and that doesn't count other disabilities, that's just spinal cord injuries), and knowing how bad of a rep the airline industry has among this group, I bet people would flock to it.

Just another thing to think about while cooking supper. :)

reality

Someone on Facebook posted an article last week. Basically, a Swiss company has developed a fake spinal cord that could potentially enable paralyzed people to walk. It doesn't replace the spinal cord or repair the damaged parts, so no feelings or sensations, prevention of muscle spasms or elimination of AHD, but it would send messages from the brain to the muscles, enabling a person to walk without the use of the heavy exoskeleton (and I'm hoping without the exoskeleton's astronomical cost). It's not been field-tested on humans yet, only mice. So realistically, even if it passes further studies and makes it into human trial, by the time it is finished and passes FDA standards, provided they approve it, it would still take time for doctors and insurance companies in the US to be willing to try it out. We're talking 5-10 years down the road, at the earliest.

I'm excited. For 35 years, the medical community has been saying "cures are around the corner".  And while this would not be a cure, it would be a tremendous step in improvement...a total game-changer for the SCI community.

But for us, it's too late. The body is meant to be used. When it's not, things begin to go wrong and break down.  We're past that point. I think sometimes people look at Bobby and think because he looks healthy, and he is, for an SCIer, that any potential cure would apply to him and radically change his life. Were this "cure" to come along 25 years ago, there would be that possibility. But not now. Muscles atrophy; bones throw away their density if they don't bear the weight they're designed to carry. Despite the daily range of motion exercises, after 35 years of not walking or moving, his body would not be able to support itself even if the brain could suddenly convey messages. And if the muscles can manage to send a message back, we'd be in even more trouble with the amount of pain he would suddenly encounter.

I know that when this moves to human trials it will hit the mainstream media, and people will get all hyped about it. We'll get e-mails and Facebook messages and comments from friends and family all excited that Bobby will finally get to walk again. And I try to smile. I've heard it all before, though nowhere to the degree that he has. I'm thankful we have friends who care enough to share even the faintest glimmer of hope, but there are days when it seems more like hot air being pressed over an over-heated engine.

But for the young guns in the SCI community, I hope this corner rounds very quickly.

some good news for a change :)

My friend and former co-worker, Amanda, is now back home in Ethiopia after being medically evacuated to Kenya last week. She's still got a long way to go and still needs prayers, but it's just good news to hear that her family is once again united and she's slowly getting better. Due to the ongoing adoption process, they feel it's best at this time for her not to return to the States, though they're still considering that as an option for a few weeks so she can seek her doctor here and get some much needed rest (though the plane trip here and there wouldn't be very restful).

And...Mom's visit yesterday to the pulmonary doctor resulted in some good news (by my standards, at least). He confirmed that neither her heart nor lungs are damaged; only the artery between the two is not working properly. Thankfully, this can be treated with medication. So she has to go through a lot of tests and paperwork this next month so the insurance will pay the exorbitant price of said meds. Bear in mind that my mother hates medicine of any kind, often has allergic reactions to meds, already has to take a lot of medication, and you can see why she's not thrilled with all of this. She has a very bad habit of taking herself off her meds when she decides it's not helping or she's taking too much, so I have this creepy feeling that we're (mainly Dad here) are in for some battles on this one.

And the Beatty family now has the extra money they needed for Emma's surgery! :) Still praying for the pain issues, but just thankful the financial hurdle is gone. You can find Emma's story here.  It seems like yesterday after her muscle surgery we turned around at a kids' activity here and she was walking the boards downhill in the obstacle course...in an upper body cast. One of the few times I think my heart has actually stopped beating.

So while I'm still praying for the many hurting and on-going struggles, it's nice and refreshing to hear some positive updates. The light at the end of the tunnel might not be a train after all.